What do I ask for to check diagnosis?

[13pinkzebras]

These are the details I have currently

[MisfitK]

If you want more feedback, I would lock this post.

But as to the question asked, since you have a lot of bloodwork, I assume you've been seeing a primary care/general internist. So, I would ask for a referral to a hematologist and go from there.

[13pinkzebras in reply to MisfitK]

How do I lock the post, I’m new here. Thank you!

[AussieNeil Partner Administrator in reply to 13pinkzebras]

This post and replies explain about locking your post and how to do so.

healthunlocked.com/cllsuppo...

Neil

[AussieNeil Partner Administrator]

I agree with MisfitK , you need to ask your primary care (GP/PCP) doctor for a referral to a haematologist. While your lymphocyte count is at the higher end of normal, it's still within the normal reference range, so the fact that it has doubled in the last 6 months is not a cause for concern. CLL specialists don't get particularly concerned at checking doubling time until the lymphocyte count has exceeded 30 (normal upper reference limit is around 3.5) and you'd need a lymphocyte count of over 5.0 with a monoclonal population of B cells with the appropriate characteristics as determined by a flow cytometry blood test, to meet the criteria for CLL/SLL. The upper and lower reference ranges are set by pathology labs at +/- 2 sigma assuming a normal distribution. That results in 5% of healthy folk having test results above or below the reference limits.

With respect to your blood test results, you haven't mentioned whether your low results are still within the reference range or are below them. I would expect that if you had bone marrow infiltration sufficiently high enough to cause petechiae, your platelet count would be very low, probably under 50 (normal lower reference limit is under 150).

Your fatigue, drenching night sweats, nodes and difficulty swallowing might be due to a chronic infection, but if your primary care doctor can't explain them, then they should refer you to a haematologist. That you've had these symptoms for a year or more indicates that whatever is causing these symptoms is chronic. There are other chronic leukaemias/lymphomas besides CLL/SLL, with CLL/SLL being the most common adult Non-Hodgkin's Lymphoma. You haven't mentioned your age, but if you are under 50, you are unlikely to have CLL/SLL, given the median age of diagnosis is about 70.

Neil

[Blue-bird_]

Have you already been diagnosed with CLL and on watch and wait? Or have you not been diagnosed with anything?

If you already have a CLL diagnosis, raise your concerns with your GP/PCP. Your symptoms sound typical but you may gave a respiratory infection in addition to CLL. Did your blood test include a CRP result? High crp can indicate inflammation.

If you already have a CLL diagnosis and are experiencing new symptoms, you could go to A&E. Do you have a fever or low grade fever daily? How long have your lymphnodes been swollen? Are you a smoker? All factors to consider, but if you're feeling poorly and your blood results are benign, you may need a bone marrow biopsy to get a diagnosis.

If your crp is high, I would ask your doctor to check for infection. You can start with a UTI dip test at home. Its easier to become dehydrated during the summer months.

[13pinkzebras in reply to Blue-bird_]

Not been diagnosed with anything, and all of my numbers are out of the normal range, both high and low. Not a smoker, I don’t drink. I’m definitely not dehydrated either.

A chronic infection is possible I suppose but I’m just not sure how it wouldn’t have been caught or knocked out by antibiotics by now considering I’ve been sick/on meds for unrelated reasons during this time period as well.

My lymph nodes being swollen in my neck was my first symptom, which started 4.5 years ago.

[Shedman in reply to 13pinkzebras]

Any other general symptoms?

Eg.

Aspects of eyes / vision, especially around bright lights

Anxiety / night terrors / startle reaction (racing heart for long time)

Higher than normal heart rate

Poor thermal regulation / or cold sensitivity and warmth worshipper

Is your diet of a specific type or restricted in specific ways? - this can also relate to a long interval of poverty limiting diet options